Prayers Needed

Please say prayers for the Simmons family. They also have an Owen with HLHS. He is just a few months older than our Owen. He's had the Norwood and the Glenn, and lately has been having some not-so-great heart function. He had a catheterization yesterday which showed he needs a heart transplant. It may be soon, or may not happen for months to years, but at some point he's going to need one.

This is our biggest fear. Our Owen will not be eligible for a transplant because of his chromosome abnormality. Transplants are rarely made available for individuals with chromosome abnormalities or mental disabilities. This is because the drug and care regimen required post-transplant is so stringent and difficult to manage. We told our heart surgeon from day 1 that we don't want a transplant, and he agreed with us. We have been super blessed over the past few months that Owen's heart function has remained so good. Of course, with the Glenn coming on Tuesday, the future still looms uncertain. Do heart parents EVER get to stop worrying?